Its 3pm at Butha Buthe cerebral palsy clinic and I haven’t had anything to drink or eat since 7.30am this morning or even been to the toilet. In fact, I have barely moved since I arrived here this morning and started assessing the children. As well as some follow up appointments 16 new children have turned up, none with their Bukana (small medical record booklet) and most accompanied by care givers or grannies who don’t know the child’s date of birth let alone what medication they are on. All have come by public transport and some from a long distance away, which is why I am soldiering on without a break, so they can hopefully get back home before dark.
My assessments are getting shorter and are cut down to the bare minimum, whether the child can move, sit up and needs assistive equipment, particularly wheelchairs or APT chairs. Many of the children have a type of cerebral palsy called dystonia, causing uncontrolled movements, making them to push back into extension, so it’s very difficult for them to sit up. There is a sad 6-year-old boy with sunken eyes, limb deformities, terrible contractures and callouses from where he has been dragging himself across the floor, a one-year-old girl who is blind and continually rubs an empty eye socket, lastly a very forlorn looking three-year-old girl who walks in with a slack jaw and her mouth open.
I look down her throat and see a gaping hole revealing an untreated cleft palate. “Does she have a problem eating” I ask her granny. Granny says that the food sometimes comes out her nose and that she has taken her to both major hospitals in Maseru but neither offered her treatment or a referral to South Africa. Since she doesn’t have the child’s Bukana I am unable to verify what has gone on, but this is a common birth defect which I have never seen untreated before as in the UK it usually receives corrective surgery as soon as possible.
I eventually finish and leave with a long list of children who need APT chairs and wheelchairs. A lot of the equipment required is for quite complicated problems and I don’t know if I can supply it all. The supply and demand for assistive equipment between the three districts is like a giant jigsaw in my head. I am constantly adding new pieces as I bring in new wheelchairs and APT chairs, while I swap around old pieces as children grow out of equipment and I take it for repair and then give it out to children that it fits and can benefit from it.
I return to Maseru, trying to focus on what I can offer these children, and not be overwhelmed by the lack of health care available in Lesotho. I have now assessed hundreds of children with disabilities but often it’s only the start of an uphill battle to get them the treatment they need, especially if they require referrals for hospital treatment. My experience of government hospitals has not been good following the neglect and appalling treatment of Sello at Motebang hospital when he was admitted for grade four pressure sores. More recently taking two children with muscular dystrophy to Q2 hospital in Maseru the most pressing question the orthopaedic doctor, Dr M, wanted to ask them was if they believed in Jesus. Fortunately, they both replied yes and received his blessing, but I was hoping for a more objective approach.
We return to see Dr M with a seven-year-old with metal work in both legs after corrective hip surgery in 2021 left her with severe leg shortening and constant pain. Ntseliseng goes with the girl while I accompany an older child to a different clinic. I get back to the car and there is still no sign of Ntseliseng, and I call her to find out that its mayhem at Dr M’s clinic and she’s no idea what happening. I look up and see the very man walking by the car and heading down a dusty path into the trees. “He’s right here” I tell her and chase after him. He looks surprised to see me and says he won’t be long and continues towards the trees. I’ve no idea if he’s going to talk to them, or perhaps imbibe in something reviving, certainly his gait is rather wandering. After a brief sojourn he returns to his clinical duties and Ntseliseng manages to grab him to look at the unfortunate 7-year-old. He gives her his blessings but more practically an X-ray referral.
Now armed with the X-ray and with Ntseliseng as back up, I take the girl to Queen Mamohato memorial hospital where she had the original operation. She was supposed to be followed up soon after this, but her mum and dad divorced, and dad took the children to stay with him and refused mum access. Mum eventually managed to kidnap her daughter and took her back home but two years later after the originally operation there has still been no follow up of her surgery. I fear things have gone badly wrong with the internal fixation of her bones causing her present deformity and pain.
Queen Mamohato hospital is relatively new and was built in partnership with private sector funding. Unhappily the government failed to meet its funding side of the bargain and after a few years the private sector withdrew its support with subsequent administration chaos. Record keeping now seems to be handwritten and rather unreliable. After queueing for two hours, we finally get to see a doctor who decides the girl not his problem and should be passed onto the doctor who did the original operation and is presently in theatre. Her X-ray is on a CD and the doctor can’t open it to view so he instructs a junior doctor to find a computer to reveal its contents.
Another hour passes, nothing has happened and worryingly we are approaching lunch time and the danger zone of post lunch inaction. I press for answers from one of the pseudo doctors who is managing to look busy without doing anything. The art is to sling a stethoscope around your neck and go in and out of various examination rooms which have no patients in them. She eventually comes back with the X-ray picture on her phone, but it is now lunch time and I wonder if all is lost. I give another hard stare to the pseudo doctor she passes; we have now been waiting for over 4 hours with a seven-year-old in a wheelchair.
Suddenly she calls me into the office and declares she has decided to admit the girl onto the ward along with the chilling news that we must stay with her until mum arrives. Fortunately, Ntseliseng manages to get hold of mum who is at work, and she agrees to come immediately and bring the necessary supplies for what might be a long stay in hospital. It takes her another hour and half for her to come. I make good use of the time by washing the girl’s wheelchair with my face mask, as its rather muddy and there are no paper towels by the sink or toilet paper in the toilet. I also ask the ladies on the ward desk if they know if the hospital does cleft palate operations. They direct me to a surgeon in an office who says know they don’t but occasionally an organisation called “Smile Train” comes to the hospital with specialist doctors who will try and operate on as many children as they can who are on the hospital cleft palate list. He has no idea when the next Smile Train will arrive, but I need to get the three-year-old on the list to see if the team give her the treatment she desperately needs.
Mum arrives and both Ntseliseng and I breath a sigh of relief. I warn mum not to let the hospital staff take her daughters wheelchair away which we have supplied. I doubt if there are many, if any, children’s wheelchairs at the hospital and we are unlikely to see if again if staff decide to borrow it for another child. It feels like we have got through a labyrinth of appointments to get the girl this far, but she has yet to have the operation and find out whether all the problems that have accumulated over the last two years from her previous operation can be sorted. As to whether the three-year-old will get the surgery she needs for her cleft palate this remains another unknown.
The following week I am back down in Butha Buthe following up children and giving out equipment. I have a small, blue recycled wheelchair for the sad 6-year-old boy saw in clinic a few weeks ago. It’s been rebuilt out of two broken wheelchairs, and I hope will give him some mobility, independence and position him better to reduce his contractures. He lives in a single room in a squalid area of poor housing along with an aunty and two of her children. I explain a little about the wheelchair and ask aunty to put him in it. He is sitting on the bed, and she grabs him by the arm and drops him in the chair like a sack of potatoes. She clearly has no affinity or liking for the boy.
With gentle encouragement he soon learns to move the wheelchair about on the small area of linoleum floor despite the contractures of his hands. I praise him and he cracks the smallest of smiles. I give out some soft night splints to try and stop his contractures getting worse, tell him to keep practicing using his wheelchair and we leave. When we are back in the car Mme Maja tells me that aunty is very angry with the mother who left months ago to supposedly find work and she has barely made contact since then. The dad left years ago and now the boy has nothing and no one, just an aunty who resents him, a painful, contracted body that doesn’t work and life in a small dark room sitting on a bed with no hope and little future. It heart breaking and I can only hope the wheelchair gives him a chink of light in the darkness.
We move on and I give out two further wheelchairs to children who are in wheelchairs which are much too small for them. Since they both spend all their day in their wheelchair it’s a huge improvement in their quality life and I can recycle both the wheelchairs they have grown out of. After a conversation with our tech back at the workshop I pick up three more broken wheelchairs collected from social development. I feel positively rich as I drive away with all the bits of wheelchairs clanking in the back of the car while I work out which children will benefit from the wheelchairs when they are repaired.
Added to the second-hand wheelchair bonanza are the 15 new chairs I have brought in from South Africa so far this year, some of them adapted with the desks we make to add extra postural support for those children who need it. Meanwhile the workshop team are cracking on with all the APT chairs that are currently on order. They are now producing chairs much more efficiently and of much better quality due to the training they’ve received, the facilities the new workshop offers and getting the students at Abia involved in the production of the chairs. There’re are no easy solutions for the huge health challenges of Lesotho that’s for sure, but we are putting in some of the pieces of the health care jigsaw puzzle where we can and slowly improving the picture.
Update: The 7year old girl has been for her operation today.
We are pressing for the little boy with the blue wheelchair to be admitted into a residential school for children with disabilities where we feel he will receive better care and a future